December 5, 2023 • 33 mins
Imagine living in a family where sudden deaths were a tragic norm. That's the reality heart mom Jackie Renford faced before the fateful identification of Long Q-T Syndrome, a genetic heart condition, in her family. Her misdiagnosis and the subsequent loss of her son and daughter have inspired her to become an advocate for early detection and treatment of this life-threatening condition. Journey with us as she shares her family's heart-wrenching story and opens up about the ongoing battle with Long Q-T Syndrome.
Jackie's experiences with Long QT Syndrome open up a world that is often misunderstood. How do you navigate through life when you and multiple family members are affected by a genetic heart condition? Jackie gives us a first-hand account of the symptoms, diagnosis, and treatment of Long Q-T Syndrome, as well as the emotional toll it takes. She emphasizes the importance of regular medical check-ups, cautious medication use, and a proper diagnosis. Find out how her family is rallying around this, the importance of comprehensive medical care, and how they're facing the realities and challenges of living with Long QT Syndrome.
We may not choose the trials we face, but we can choose to find blessings amidst adversity. In the spirit of finding light in the darkness, I share my own experiences of living with a congenital heart defect and the support that has been instrumental in my journey. As we approach the holiday season, I encourage you to join us in providing free programming for the congenital heart defect and bereaved communities. It's through our stories that we realize we are not alone, and it's in our blessings that we find hope. Join us for a profound understanding of Long QT Syndrome and a message of resilience and hope.
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Jackie's experiences with Long QT Syndrome open up a world that is often misunderstood. How do you navigate through life when you and multiple family members are affected by a genetic heart condition? Jackie gives us a first-hand account of the symptoms, diagnosis, and treatment of Long Q-T Syndrome, as well as the emotional toll it takes. She emphasizes the importance of regular medical check-ups, cautious medication use, and a proper diagnosis. Find out how her family is rallying around this, the importance of comprehensive medical care, and how they're facing the realities and challenges of living with Long QT Syndrome.
We may not choose the trials we face, but we can choose to find blessings amidst adversity. In the spirit of finding light in the darkness, I share my own experiences of living with a congenital heart defect and the support that has been instrumental in my journey. As we approach the holiday season, I encourage you to join us in providing free programming for the congenital heart defect and bereaved communities. It's through our stories that we realize we are not alone, and it's in our blessings that we find hope. Join us for a profound understanding of Long QT Syndrome and a message of resilience and hope.
To reach Anna, visit https://heartsunitetheglobe.com or email her at Anna@hearttoheartwithAnna.com
Please take a moment to follow Heart to Heart with Anna on your preferred social media platforms:
Apple Podcasts (https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2)
Facebook (https://www.facebook.com/HearttoHeartwithAnna/)
YouTube (https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw)
Instagram (https://www.instagram.com/hugpodcastnetwork/)
If you enjoy this program and would like to be a Patron, please check out our Patreon page (https://www.patreon.com/HeartToHeart)
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
It definitely gives you a new leaseon life, and it's not a death
sentence. If you do have this, it's treatable, but it could be
a death sentence if it's not treated. Welcome to you hard to heart with
Anna. I am Anna Juwarski andyour host. I'm also a heart mom
to an adult who was born ata single ventricle heart in nineteen ninety four.
(00:24):
This is the reason I am thehost of your program. Jackie Renford
thought her family had a history ofepilepsy. After losing her son Jimmy in
two thousand and her daughter Chrissy intwo thousand and two, she was desperate
to find a way to save hertwo baby granddaughters. It wasn't until her
own leather started fainting and having irregularheartbeats that she finally got answers. Emergency
(00:49):
doctors performed an electro cardiogram, oran ECG, and promptly diagnosed her with
long QT syndrome. Jackie and hergranddaughters Alexis and Jessica also had an ECG
and they were diagnosed with the syndromeas well. Jackie has since started a
chapter of the Sudden Cardiac Arrest Associationin Indianapolis. She works with scientists,
(01:15):
doctors, parents and others to promoteawareness of sudden cardiac arrest and access to
the revelation and treatment. In honorof her children and grandchildren, she works
to spread awareness of long QT syndromein order to help other families prevent the
loss of their loved ones. Mylongtime listeners will remember Jackie from her other
appearances on Heart to Heart with Anna, especially her most recent appearance when she
(01:41):
talked about long QT syndrome, geneticsand pregnancy. Welcome back to Heart with
Anna, Jackie Hiana, thank youso much for having me back. I
have been looking forward to this.I'm hoping that we can get the word
out there and everybody takes the timeto listen to this podcast because it can
save a life exactly. That's whatwe're all about, is educating, inspiring,
(02:07):
empowering, and if we could savea life and reckoning, that would
be amazing. Yes, absolutely.But before we get into this episode,
I want to express my sorrow atthe loss of your mom. She was
such an amazing woman and I'm soglad I got a chance to meet her
on the Bereached but Still Me podcast. And thank you for having her.
(02:28):
She really enjoyed sharing our story witheveryone, and she was a lot like
me. She wanted to spread theword in hopes of saving others. And
ironically she didn't pass from the longQT. She passed because she took a
bad fall and couldn't recover. Butshe was ninety four years old. So
it's a story of inspiration to peoplethat do have this illness that they can
(02:51):
continue to live a long wife iftreated. Yes, wow, ninety four.
There are a lot of people whodon't have long queue ge syndrome who
don't make it that long. HAbsolutely, my son passed at twenty two
and my daughter at twenty one.A lot of your family members passed far
too young as well, didn't theycorrect, Yeah, we're tracking it back
(03:14):
to the nineteen thirties, around theGreat Depression, when my mom was only
two years old. My grandfather mygrandma took us to the Fresh Stripes and
that night he went to bed andwent to sleep, and my grandma woke
up. He had already passed away, and they said he had suffocating spells
is what they called it back then. I'm guessing from what I know now
(03:38):
and having this for my entire lifethat it was the long qutea and he
probably was having some rapid heartbeat andit probably scared y. Yeah, that
would scare me too. Oh mygoodness. Was it like growing up in
a family where family members just suddenlydied? I was a child. I
(03:58):
think it was just part of mylife. I didn't know any different,
if that makes any sense, becauseit was always something. It was always
startledly no matter when somebody's suffering agrand and All seizure, it is terrifying.
So anybody out there that has faintingspells, the grand in all seizures,
the wrap and heartbeat of family historyof sudden death unexplained, please take
(04:20):
the time to listen to this showbecause it could truly help someone. So
you're saying Grandma seizures. So werethe seizure as a result of the long
qt arrhythmia? Yes, it was. What it does is when our heart
starts in arrhythmia, the heart startsquivering. Therefore it's no longer pumping the
(04:41):
blood to the brain and it cutsoff the oxygen. So I remember as
a child when I had my firstepisode, I was five or six years
old, and I was running downthe street and then all I remember was
the next thing I knew, Ihad fallen over in a rosebush, having
a grand of all seizure. Ohmy gosh, So the epilepsy wasn't an
(05:03):
unreasonable diagnosis then, because you didhere it was seizures, because that's all
the facts they probably had at thattime, because long QT wasn't discovered till
nineteen eighty one with a doctor Vincentand I did research years ago, but
it seems like his wife had astrange family history similar to mine, and
(05:27):
him being a doctor, he starteddoing his own research and that's where he
discovered the QT intervals in her familywere longer than most interesting. Yeah,
and that was the year my daughterwas born. Ironically, Wow, okay,
so you were already an adult,Oh yes, when it was found
in me. Yes, the thingwas about two thousand and three is when
(05:50):
they discovered the long QT. MikeChristy passed and three we were literally ten
months from saving my daughter. Soyou got to think we had suffered from
these my entire life, my wholefamily, and long before I was even
born. And then they find itin me, and I was literally months
(06:10):
from saving my child in two yearsfrom saving my son. If we would
have no they could have had adefibrillator put in and been treated with beta
blockers and know what medications to takeand what not to take. And that
just absolutely makes a world of difference. Yeah, it absolutely does. So
(06:30):
was having that epilepsy diagnosis? Wasthat scary for you? Because that seems
scary in and of itself. Andthe other thing I'm wondering is did having
that epilepsy diagnosis did that mean thatyou had certain medications? And did those
medications mask the long qute syndrome.I've done my own research again, and
(06:55):
I no medical professional here, butwe were treated with the direct called to
barbaratal, which that is not atranquilizer, but it kind of relaxes you,
and I feel like that probably madethe difference in our heart. When
we went to put my kids onmedication, they told me they didn't want
(07:15):
to put them on there because itdoes cost swelling of the gun. So
they put them on a medication calledtank retal. We were on different types
of medication and that had to beenwhy most of us had not passed away
years ago. After I had givenbirth, my heart was beating so fast.
My daughter was probably only two orthree months, and I had suffered
(07:39):
a horrible seizure, and I'm prettysure I was near death at that point.
I remember it was awful having aseizure, and my son began yelling
my name. He was three yearsold, and him yellow. Mommy pulled
me out of it, but myheart was beating so fast that doctors had
no clue why. So they hadincreased my pena barbaratal probably about three or
(08:01):
four times more than what I shouldbe taking, and then I quit having
an episode. So that's the onlything I can think of medication. So
the medication actually probably did save yourlife, even though it wasn't a proper
medication for what was really going on. No, because see you got to
(08:22):
remember you're talking about nineteen eighty oneand doctor Vincent was probably in the process
of discovering this, so we areways out for it, even being known
to people that the heart problems canshow signs similar to epilepsy. I never
(08:43):
dreamed we had heart Trouble to NightForever by the Baby Blue Sound Collective.
I think what I love so muchabout this CD is that some of the
songs were inspired by the patients.Many listeners will understand many of the different
(09:05):
songs and what they've been inspired by. Our new album will be available on
Itunesmazon dot Com, Spotify. Ilove the fact that the proceeds from this
CD are actually going to help thosewith cogital heart effects enjoy the music tonight
forever. This content is not intendedto be a substitute for professional medical advice,
(09:31):
diagnosis, or treatment. The opinionsexpressed in a podcast are not those
of Heart Tonite the Globe, butof the hosts and guests, and are
intended to spark discussion about issues pertainingto congenital heart disease or bereavement. You
are listening to Heart to Heart withEmma. If you have a question or
comment that you would like to addressedon our show, please send an email
(09:54):
to Anna Jaworski at Anna at HeartToheartwithanna dot com. That's Anna at Heart
to Heart with Emna dot com.Now back to Heart to Heart with Emma
Jackie. Before the break, wewere talking about growing up in a family
diagnosed with epilepsy and knowing that yourgrandfather died very young, and we learned
(10:15):
in the opening that your mom wasdiagnosed correctly, and that spurred more family
members into being tested and discovering thatthey also had long Hut syndrome, including
you, not epilepsy. That's correct. Mom always had anxiety. I think
she did have anxiety, but alot of it was showing itself in the
way of the heart. Mom wasalways so scared of having seizures, rightfull
(10:37):
least because honestly, I can't evenimagine what she went through having seizures in
the forties and fifties because medical helpwasn't like it is today, and she
probably wasn't on any medication, right, that's correct. Yeah, just once
again the seizure medication. They didput Mom on nerve medication, which probably
(10:58):
helped her more than anything. Andshe had always talked about going to this
doctor and she was having horrible seizuresafter she had given birth to my brother
in nineteen fifty and she said thisdoctor, I think his name was doctor
Reisler, give her a shot ofvitamin B twelve. I believe that's the
one that's supposed to help sue thenerves. And she says she felt instant
(11:20):
relieved. So I don't know whatthe connection could be with that, but
I do remember her telling me thatthey had even given mom blood transfusions,
because wow, yeah, can youimagine I can just see going back in
tie laying there in this young womanjust giving birth, just having one and
seizure after another, and so theywere just I think probably grasping at strolls
(11:46):
because she's about twenty one or twentytwo years old, so they just started
giving her blood transfusions. Now wonderwhere she was so scared? Had had
anxiety? Yeah, and we allhave a touch of anxiety. There's something
connected with that that I think maybeit's just experiencing the horrible seizures. And
it can be a fainting spell aswell. We've seen that where we just
(12:07):
pass out. It doesn't always haveto be a Grandamall seizure. I would
just recommend to people, especially iftheir kids are active and it's worse,
to please get them the proper physicalyou need to make sure if you have
a history of sudden death, pleasemake sure you get your kid's hearts checked.
It's so important, Yeah, itreally is. How has the new
(12:30):
diagnosis affected the new generations of yourfamily and how many members of your family,
Jackie, actually have long qto syndrome. So I would say eight to
nine if we include everyone that's alreadypassed or getting up there in the double
digits. We had a cousin thateven went to sleep. She had horrible
seizures and she went to bed.She had four kids at home, her
(12:54):
husband was at work. He comehome and found her deceased. Probably had
a werible seizure and chat cardiac arressis what happened. But this was probably
in the seventies. I believe we'vehad a lot of sudden death. We
had another cousin who went to hisbasement to workout. He went upstairs and
(13:15):
sat down and passed away. Thatdefinitely is a symptom of long QT.
Okay, so probably double digit numbersof your family have been affected. And
currently there are eight members of yourfamily who have been diagnosed. Are there
other family members living? If wewant to count the living, I would
(13:37):
say we probably have six or seven. At this point, I was still
living. And do you have familymembers who you suspect may have long QT
but they haven't gone for testing.I do think that they're distant relatives.
After I received our genetic testing,they sent me a letter so I could
(13:58):
say and out to family members thatthey possibly need to be checked for this,
But they would say things like thisis the first I've heard of that,
And I just shared the information thatwas given to me because we could
possibly have that same gene. Theynever really contacted me over it, but
I did. My part is sharingit with them. Yeah, I definitely
think it's still out there. I'mnot sure. Maybe it's scarsen and they
(14:22):
don't want to talk about it,but it's out there and it's happening.
We have one side of the family. They just won't admit that it come
from that side. And back thenwhen you had a seizure, you had
a fit and it was embarrassing.Sure, it was different than it is
today. How old were your granddaughterswhen you discovered that the long QT syndrome
(14:46):
gene might be part of your familyand how did they react to being tested.
Alexis was on late five, soshe was fine with it. Jessica
was two. They had done severalekg's of Jessica because she was only two,
and it really didn't start showing alot until she was five. Now,
(15:07):
my granddaughter Alexis, she had herbaby boy and he does have long
qt. He was the youngest diagnostin our family at two days. Oh
amazing. They whisked him up andtook him to the nick You. My
granddaughter had reached out to me andshe said, he's ekg isn't looking good,
grandma, And I'm thinking, ohboy, And now she's getting ready
(15:31):
to give birth again. So let'sall pray that gene is not going to
be carried on through him. Butwe will see they'll be ready. That's
amazing. Yeah, poor little babyboy has been on it for his whole
life, since he's been two daysold. Wow. Do you feel that
now that your family has a properdiagnosis, your family has a new lease
(15:52):
on life. Absolutely now, becauseyou can live your life normally. My
granddaughter Alexis, who was a colorguard. She was very busy, always
dancing, but she had a heartto fibrilaate or so in the event she
did go down, she would berevived. Yeah, it definitely gives you
a new lease on life. Andit's not a death sentence if you do
have this. It's treatable, butit could be a death sentence if it's
(16:18):
not treated, which your family knowsall too well exactly, and all you
have to do is follow everything.When you go to your pharmacy, you
give them all your medical history.We have long QT and it's in their
system, I'm sure. But thenwe can't take just anybiotic. We can
only take maybe the pen of sillardsbecause the other antibiotics can start our heart
(16:42):
into an arrhythmia. We can't takeben a drill. Even if we take
something number of the counter, weget a package, we take it up
to the furnaces and ask if thisis safe with long QT syndrome. Okay,
so now that you have a defibrillator, is that right? A pacemaker
which we have. We have adefibrillator and it is a life saving device.
(17:04):
So if you go into cardiac arrest, it's going to shock your heart
back into rhythm, but it hasa pacemaker in there. It's going to
pace your heart back into a normalrhythm. So if it drops real low
from being shocked, it's going totry to put you back into rhythm.
It also records any activity you have. It's amazing device. Very costly,
(17:26):
but it's amazing. I'm sure itis costly that your insurance should cover that,
right, Yeah, depending on yourinsurance. But yes, it covers
it. You just have to makesure deductable. But rtt he doesn't have
one because they do not want toput a defibrillator in you unless they absolutely
have to when you're small. Mygranddaughters did not receive it until they were
(17:51):
twelve or thirteen years old because thebody changes so fast and they have to
put it in a place to protectit. Because you know how rough kids
are, so I guess they weren'tas worried about the children having sudden cardiac
arrest as they were when you getolder, because it does sound like most
of the people passed as adults,not as children. That's true. My
(18:15):
granddaughter Alexis had a horrible episode.She needed a defibrillator place, and her
mom didn't want her to have itput in because she wanted her to be
active in golf, which was ahorrible decision. So Alexis started having seizures
and once her heart started in arrhythmia. She ended up being at Rightly Hospital
for well over a week. Ihad gotten up there. One day she
(18:38):
sets up in bed, her eyesrow back in her head. They had
to call a code blue. Soyou can imagine where I was at that
point, I thought, I cannotdo this, but you need to give
that defibrillator in your body. Idon't care what activity there is. That
is a life saving device and thatneeds to go in as soon as you
can get it put in. Sois having a dicibulator casemaker, which is
(19:03):
what it sounds like you all have. Is that prohibitive for playing golf or
other sports? You can play golf. I think it's competitive sports they want
you to stay away from because theydon't want it to get hit, like
with football or soccers. Exactly.Yes, got it. I feel like
there's certain activities that my grandson isgoing to be able to do once he
(19:26):
gets a little older. We're notsure, of course, that will go
through the physician. And I knowLexa that she had that horrible event.
There's no way she's going to everallow her son to have the experiences that
she unfortunately had to endure. ManagerWorski has written several books to empower the
congenital heart defect or CCHD community.These books can be found at Amazon dot
(19:49):
com or at her website www dotBabyheartspress dot com. Her bestseller is the
Heart of a Mother, an anthologyof stories written by women for women in
the HD community, and as otherbooks. My Brother Needs an Operation,
The Heart of a Father, andHypoplastic Left Heart Syndrome, a handbook for
parents will help you understand that youare not alone. Visit babyheartspress dot com
(20:15):
to find out more. Heart toHeart with Anna is a presentation of Hearts
Unite the Globe and is part ofthe hug podcast network. Hearts Unite the
Globe is a nonprofit organization devoted toproviding resources to the congenital heart defect community
(20:36):
to uplift, empower and enrich thelives of our community members. If you
would like access to free resources pertainingto the HD community, please visit our
website at www. Congenitalheartdefects dot comfor information about CHD, the hospitals that
treat children with HD, summer campsfor HD survivors, and much much more.
(20:57):
In our most recent episode, wetouch about pregnancy and long QT syndrome.
So can you tell us about someof the newest additions to your family?
Absolutely, Anna, I'm so happyto say, even though I have
lost my two children, they gaveme a granddaughter each and those granddaughters are
(21:18):
giving me great grandkids. I havemy precious little Armani, my granddaughter Jessica
has, and their Alexis. Shehas the most adorable golden hair boy.
I can't stand and he's so cutebecause my son had golden hair and I'd
been one of my golden hair boys. And then she's expecting another one in
just a few weeks, so it'svery exciting. It is so exciting.
(21:44):
Oh my god, three great grandkids. And then my other granddaughter she's expecting
in April, so we're very excited. Wow. Okay, so you have
Jessica, who has long qtea andshe was Chrissy's that was Chrissy's daughter,
Yes, and she has her daughter, but she's just the sweet as could
(22:06):
be, of course. And thenwe have Alexis. That's my son,
Jimmy's daughter that she has ret andhe's getting ready to turn two years old
here next week. And then weare expecting another baby, Casey, maybe
after Christmas, but he'll let usknow when he's coming. Yeah, babies
(22:27):
have their own timetables, don't they. And yes, you have other children
who have also given you grandbabies.My husband's granddaughters expecting her first baby in
April, so we're very excited.We just have babies everywhere. Oh my
goodness, that is so exciting,especially around the holidays. Yes, it
is. It's so fun to havebabies around. It really is tiring,
(22:52):
but fun. It is tiring.I understand since I have a five year
old grandbaby myself, and she wouldnot like me grand baby granddaughter myself.
Is she already like that? It'sso young? Oh my gosh. She
is in jiu jitsu Resilian jiujitsu classesnow she's four. But her father also
(23:14):
started taking taekwondo, not jiu jitsu, but he took taekwondo at four,
and she's just a little natural.So yes, she's very grown up.
She may only be four, butshe asks more like she's fourteen. Oh
my goodness. I'm a little concernedfor you guys when she turns thirteen.
And that's all, oh HARMANI is. She is very independent. She wants
(23:37):
to do everything on her own.And she here, she comes running with
a knife, and now we don'tdo that. You know, some things
you're not going to do on yourown. That's not your choice, right,
So she's very independent. I thinkthat's awesome, and probably takes after
her grandmother a little bit for hergreat grandmother, right, yeah, yeah,
(24:00):
I told her I was their greatgrandma. She goes, no,
you're just my real grandma. Okay, I thought that was sweet too,
I'm sweet. She sounds amazing.Jessica and Alexis didn't get their pacemakers until
they were into their teens. Butit sounds like the younger generation that they're
starting to put the pacemaker to fibrillatorsin earlier. Am I understanding that?
(24:23):
Right? Not really? No?And let's okay, and let's write if
he would have an event, andif that was the same with Jessica and
Alexis, if they would haven't hadan event younger, they would have to
put the pacemaker in their stomach toprotect it, right, because they have
so much growing to do, theyjust couldn't put it in the chest.
(24:45):
Plus then you have the stomach toprotect it. So right, No,
let's pray he never has an eventand then he just does what we do?
We go get it in at thirteenyears old. And okay, so
he was diagnosed two, but theydidn't jump to doing something about it.
He was not accessed at two days. Oh two days okay, Yeah,
(25:07):
at two days old, but theydo blood. Then when the EUKG look
very similar to my granddaughters, whichhers looks just like my then they went
ahead and started email the beta blockerswhen they were like ninety eight percent sure
it was long QT. With ourfamily history being so scary, so he
gets his medication twice a day.He takes it like a real chance.
(25:30):
Okay. So they are attending tothis diagnosis via medication, and it's not
the same medication you had for epilepsy. This is specifically for long QT syndrome.
Yes, to keep their heart,hopefully, to keep their heart and
rhythm so they do not experience anepisode. Okay, so that's good to
know though that as infants they're notnecessarily needing the facemaker right away, but
(25:55):
they are putting them on medication tokeep their heart and normal rhythm. Yes,
when Alexis gives birth again, inthe event that the EKG would look
similar to our heart rhythm, thanit'll probably be the same exact process.
Now, Armani does not have it. She is the first of my children
not to have it, and unbelievable. Why no, that is yeah,
(26:21):
because I have Jimmy and Chrissy Alexisand Jessica. So I'm just thinking when
she's born, that's it. She'sgoing to have it. First off,
they took her to nick you immediatelyafter she was born. This is the
process, and they monitor their heartrhythm for several hours, and then they
have an electro physiologists come in andlook at their heart rhythm to see if
(26:44):
it looks like ours. The lngQT intervotes and hers measured normal. Wow.
Now is there a concern that eventhough it's an infinite looks normal,
that it could present itself later.Well, they're taking blood, and if
it's not the blood, then Ido still have concerns about medication and things
(27:06):
for And this is just my ownpersonal preface. I really still want her
to have an EPAG just but I'mpretty sure they probably won't because she doesn't
have the gene. Wow, that'sjust amazing. But that just shows how
complicated pregnancy genetics it's all that samelycomplicated, and that medications actually play that
(27:32):
big of a role of that.It's just crazy. Yeah. Wow,
you've experienced a lot, so manygenerations. You've seen your mother go through
being diagnosed very late in life comparedto elective and to Jessica, and yet
she lived in ninety four, which, wow, will Adine, you just
(27:55):
amaze me. She wasn't going togive up. And I tell you,
I still can't believe she's gone onsome days because she was a fighter.
She was a fighter. I thinkthat's part of your genes too, Jackie.
Yeah. Marm would always put herselfdown and I would say, my
goodness, you've accomplished so much inyour life, so much. Can you
(28:18):
imagine it's not enough. You havethe seizures, then your kids grow up
and they start having seizures, andthen your grandkids. Yeah, and to
have to witness that. Wow,Now did she see HARMANI? Oh,
yes, yeah, so that's herwas her great great and rep that is
(28:40):
her great grandkids. And then myniece has two sons. Then my nephew
has a daughter also, so shehas several great grandkids. What a legacy
to lead behind that is a hugelegacy. And then for her to be
the one who saw the mystery.It was because of what happened to her
(29:03):
that you all discovered the long QTsyndrome diagnosis and a revision of the epilepsy
diagnosis, which I think is amazingso one day she called it. She
said she wasn't billy well and herheart was beat fast, which we thought
she had bad boat problems, whichI think she had a combination of both.
(29:26):
But it was at that time Iwas like, are you okay,
Mom? Do you need to goto the doctor, because I believe I
was going to work that day,so I went on to work, and
then I soon to be step back. He went over there and told her,
come on, we're going to thehospital. They took her to the
hospital, and then that's where westarted to receive a phone calls, which
I think she was seventy two orseventy three, saying, your mom's in
(29:48):
the intensive care in the cardiac youknow which Okay, you're seventy two.
You're thinking, okay, that's notuncommon. But we get up there.
I remember looking at mom's EKG andit was the most bizarre looking heart rhythm
I'd ever seen in my life.Oh my God comes in and says,
I need to talk to all yourfamily. So they take us in this
(30:11):
little room and he says, yourmom has something called long QT syndro.
I remember writing it down, thinking, what in the world is this man
that can kill young people without warning. It was like, all of a
sudden, the piece of that puzzlejust went right into place. Sure,
I'm sure that's exactly what happened toyou and your mom. How did mom
(30:36):
react when she got the news?We just couldn't believe it. We always
knew we had something, and wejust because if you do your research on
ephilepsy, it's not hereditary. AndI'm sitting there going, WHOA, why
didn't we ever have it? Ididn't know that epilepsy was not hereditary.
Yeah, and I just couldn't understandwhy we were all having these episodes because
(31:03):
I tell you, my sister arecome very close to losing her life too.
We've all had experience in your dadand my niece she come very close
too. Very sad story, butyet it's a story of hope and resilience.
Yeah, you lose a child,you have to carry on for those
kids. Look at what I havetried to do for my grandkids. To
carry on my children. You haveto be their eyes and ears and carry
(31:26):
on their legacy. I love howyour family has all pulled together. You've
supported one another, You've been braveto confront You've confronted a really serious diagnosis
head on. You and Meledein,you have just taken the word by storm
(31:47):
and are doing so much to informother people so that they don't lose loved
ones as well. I am justso impressed with you, Jackie and your
family's kudos to you. I loveyou all, Thank you Anna, and
thank you for having us on theshow. And I just pray that people
take the time to listen to thestory. It will help save a life.
It's nice to know that even whenthe worst thing happens, and losing
(32:13):
a child has to be one ofthe worst things a mother or a father
can endure, that you can stillfind happiness. You can still find joy
and thank goodness because Ourmani and Rhettand soon to be Casey they deserve families
that are happy and that love themunconditionally and can show them the beauty of
(32:37):
life. That you can live withthis syndrome, but you just have to
be careful, just like with anythingelse, so you can't be a diabatic
and go out and need all thesugar you want. You have shoes,
follow a diet into medication. It'sno different exactly. Thank you so much
for coming on a program today,Jackie. I'm so delighted that we could
(32:59):
tell talk about this and talk aboutthe blessing that comes with this diagnosis.
Thanks for listening today. If youenjoyed listening to this episode, please consider
becoming a patriot this visit www dotpatreon dot com, slash part to Heart
and pledge amplyham out. It onlytakes a few minutes to make a big
(33:20):
difference because of a pizza. Youcan help us continue to provide great programming
for free to they congenital heart defectand bereaved communities. Have a great day,
Happy holidays, and remember, myfriends, you are not alone.
Thank you again for joining us thisweek. We hope you have become inspired
and empowered to become an advocate forthe congenital heart community. Heart to Heart
(33:44):
with Anna with your host Anna Jaworskican be heard at any time wherever you
get your podcasts. A new episodeis released every Tuesday from noon Eastern time.
It definitely gives you a new leaseon life, and it's not a death
sentence. If you do have this, it's treatable, but it could be
a death sentence if it's not treated. Welcome to you hard to heart with
Anna. I am Anna Juwarski andyour host. I'm also a heart mom
to an adult who was born ata single ventricle heart in nineteen ninety four.
(00:24):
This is the reason I am thehost of your program. Jackie Renford
thought her family had a history ofepilepsy. After losing her son Jimmy in
two thousand and her daughter Chrissy intwo thousand and two, she was desperate
to find a way to save hertwo baby granddaughters. It wasn't until her
own leather started fainting and having irregularheartbeats that she finally got answers. Emergency
(00:49):
doctors performed an electro cardiogram, oran ECG, and promptly diagnosed her with
long QT syndrome. Jackie and hergranddaughters Alexis and Jessica also had an ECG
and they were diagnosed with the syndromeas well. Jackie has since started a
chapter of the Sudden Cardiac Arrest Associationin Indianapolis. She works with scientists,
(01:15):
doctors, parents and others to promoteawareness of sudden cardiac arrest and access to
the revelation and treatment. In honorof her children and grandchildren, she works
to spread awareness of long QT syndromein order to help other families prevent the
loss of their loved ones. Mylongtime listeners will remember Jackie from her other
appearances on Heart to Heart with Anna, especially her most recent appearance when she
(01:41):
talked about long QT syndrome, geneticsand pregnancy. Welcome back to Heart with
Anna, Jackie Hiana, thank youso much for having me back. I
have been looking forward to this.I'm hoping that we can get the word
out there and everybody takes the timeto listen to this podcast because it can
save a life exactly. That's whatwe're all about, is educating, inspiring,
(02:07):
empowering, and if we could savea life and reckoning, that would
be amazing. Yes, absolutely.But before we get into this episode,
I want to express my sorrow atthe loss of your mom. She was
such an amazing woman and I'm soglad I got a chance to meet her
on the Bereached but Still Me podcast. And thank you for having her.
(02:28):
She really enjoyed sharing our story witheveryone, and she was a lot like
me. She wanted to spread theword in hopes of saving others. And
ironically she didn't pass from the longQT. She passed because she took a
bad fall and couldn't recover. Butshe was ninety four years old. So
it's a story of inspiration to peoplethat do have this illness that they can
(02:51):
continue to live a long wife iftreated. Yes, wow, ninety four.
There are a lot of people whodon't have long queue ge syndrome who
don't make it that long. HAbsolutely, my son passed at twenty two
and my daughter at twenty one.A lot of your family members passed far
too young as well, didn't theycorrect, Yeah, we're tracking it back
(03:14):
to the nineteen thirties, around theGreat Depression, when my mom was only
two years old. My grandfather mygrandma took us to the Fresh Stripes and
that night he went to bed andwent to sleep, and my grandma woke
up. He had already passed away, and they said he had suffocating spells
is what they called it back then. I'm guessing from what I know now
(03:38):
and having this for my entire lifethat it was the long qutea and he
probably was having some rapid heartbeat andit probably scared y. Yeah, that
would scare me too. Oh mygoodness. Was it like growing up in
a family where family members just suddenlydied? I was a child. I
(03:58):
think it was just part of mylife. I didn't know any different,
if that makes any sense, becauseit was always something. It was always
startledly no matter when somebody's suffering agrand and All seizure, it is terrifying.
So anybody out there that has faintingspells, the grand in all seizures,
the wrap and heartbeat of family historyof sudden death unexplained, please take
(04:20):
the time to listen to this showbecause it could truly help someone. So
you're saying Grandma seizures. So werethe seizure as a result of the long
qt arrhythmia? Yes, it was. What it does is when our heart
starts in arrhythmia, the heart startsquivering. Therefore it's no longer pumping the
(04:41):
blood to the brain and it cutsoff the oxygen. So I remember as
a child when I had my firstepisode, I was five or six years
old, and I was running downthe street and then all I remember was
the next thing I knew, Ihad fallen over in a rosebush, having
a grand of all seizure. Ohmy gosh, So the epilepsy wasn't an
(05:03):
unreasonable diagnosis then, because you didhere it was seizures, because that's all
the facts they probably had at thattime, because long QT wasn't discovered till
nineteen eighty one with a doctor Vincentand I did research years ago, but
it seems like his wife had astrange family history similar to mine, and
(05:27):
him being a doctor, he starteddoing his own research and that's where he
discovered the QT intervals in her familywere longer than most interesting. Yeah,
and that was the year my daughterwas born. Ironically, Wow, okay,
so you were already an adult,Oh yes, when it was found
in me. Yes, the thingwas about two thousand and three is when
(05:50):
they discovered the long QT. MikeChristy passed and three we were literally ten
months from saving my daughter. Soyou got to think we had suffered from
these my entire life, my wholefamily, and long before I was even
born. And then they find itin me, and I was literally months
(06:10):
from saving my child in two yearsfrom saving my son. If we would
have no they could have had adefibrillator put in and been treated with beta
blockers and know what medications to takeand what not to take. And that
just absolutely makes a world of difference. Yeah, it absolutely does. So
(06:30):
was having that epilepsy diagnosis? Wasthat scary for you? Because that seems
scary in and of itself. Andthe other thing I'm wondering is did having
that epilepsy diagnosis did that mean thatyou had certain medications? And did those
medications mask the long qute syndrome.I've done my own research again, and
(06:55):
I no medical professional here, butwe were treated with the direct called to
barbaratal, which that is not atranquilizer, but it kind of relaxes you,
and I feel like that probably madethe difference in our heart. When
we went to put my kids onmedication, they told me they didn't want
(07:15):
to put them on there because itdoes cost swelling of the gun. So
they put them on a medication calledtank retal. We were on different types
of medication and that had to beenwhy most of us had not passed away
years ago. After I had givenbirth, my heart was beating so fast.
My daughter was probably only two orthree months, and I had suffered
(07:39):
a horrible seizure, and I'm prettysure I was near death at that point.
I remember it was awful having aseizure, and my son began yelling
my name. He was three yearsold, and him yellow. Mommy pulled
me out of it, but myheart was beating so fast that doctors had
no clue why. So they hadincreased my pena barbaratal probably about three or
(08:01):
four times more than what I shouldbe taking, and then I quit having
an episode. So that's the onlything I can think of medication. So
the medication actually probably did save yourlife, even though it wasn't a proper
medication for what was really going on. No, because see you got to
(08:22):
remember you're talking about nineteen eighty oneand doctor Vincent was probably in the process
of discovering this, so we areways out for it, even being known
to people that the heart problems canshow signs similar to epilepsy. I never
(08:43):
dreamed we had heart Trouble to NightForever by the Baby Blue Sound Collective.
I think what I love so muchabout this CD is that some of the
songs were inspired by the patients.Many listeners will understand many of the different
(09:05):
songs and what they've been inspired by. Our new album will be available on
Itunesmazon dot Com, Spotify. Ilove the fact that the proceeds from this
CD are actually going to help thosewith cogital heart effects enjoy the music tonight
forever. This content is not intendedto be a substitute for professional medical advice,
(09:31):
diagnosis, or treatment. The opinionsexpressed in a podcast are not those
of Heart Tonite the Globe, butof the hosts and guests, and are
intended to spark discussion about issues pertainingto congenital heart disease or bereavement. You
are listening to Heart to Heart withEmma. If you have a question or
comment that you would like to addressedon our show, please send an email
(09:54):
to Anna Jaworski at Anna at HeartToheartwithanna dot com. That's Anna at Heart
to Heart with Emna dot com.Now back to Heart to Heart with Emma
Jackie. Before the break, wewere talking about growing up in a family
diagnosed with epilepsy and knowing that yourgrandfather died very young, and we learned
(10:15):
in the opening that your mom wasdiagnosed correctly, and that spurred more family
members into being tested and discovering thatthey also had long Hut syndrome, including
you, not epilepsy. That's correct. Mom always had anxiety. I think
she did have anxiety, but alot of it was showing itself in the
way of the heart. Mom wasalways so scared of having seizures, rightfull
(10:37):
least because honestly, I can't evenimagine what she went through having seizures in
the forties and fifties because medical helpwasn't like it is today, and she
probably wasn't on any medication, right, that's correct. Yeah, just once
again the seizure medication. They didput Mom on nerve medication, which probably
(10:58):
helped her more than anything. Andshe had always talked about going to this
doctor and she was having horrible seizuresafter she had given birth to my brother
in nineteen fifty and she said thisdoctor, I think his name was doctor
Reisler, give her a shot ofvitamin B twelve. I believe that's the
one that's supposed to help sue thenerves. And she says she felt instant
(11:20):
relieved. So I don't know whatthe connection could be with that, but
I do remember her telling me thatthey had even given mom blood transfusions,
because wow, yeah, can youimagine I can just see going back in
tie laying there in this young womanjust giving birth, just having one and
seizure after another, and so theywere just I think probably grasping at strolls
(11:46):
because she's about twenty one or twentytwo years old, so they just started
giving her blood transfusions. Now wonderwhere she was so scared? Had had
anxiety? Yeah, and we allhave a touch of anxiety. There's something
connected with that that I think maybeit's just experiencing the horrible seizures. And
it can be a fainting spell aswell. We've seen that where we just
(12:07):
pass out. It doesn't always haveto be a Grandamall seizure. I would
just recommend to people, especially iftheir kids are active and it's worse,
to please get them the proper physicalyou need to make sure if you have
a history of sudden death, pleasemake sure you get your kid's hearts checked.
It's so important, Yeah, itreally is. How has the new
(12:30):
diagnosis affected the new generations of yourfamily and how many members of your family,
Jackie, actually have long qto syndrome. So I would say eight to
nine if we include everyone that's alreadypassed or getting up there in the double
digits. We had a cousin thateven went to sleep. She had horrible
seizures and she went to bed.She had four kids at home, her
(12:54):
husband was at work. He comehome and found her deceased. Probably had
a werible seizure and chat cardiac arressis what happened. But this was probably
in the seventies. I believe we'vehad a lot of sudden death. We
had another cousin who went to hisbasement to workout. He went upstairs and
(13:15):
sat down and passed away. Thatdefinitely is a symptom of long QT.
Okay, so probably double digit numbersof your family have been affected. And
currently there are eight members of yourfamily who have been diagnosed. Are there
other family members living? If wewant to count the living, I would
(13:37):
say we probably have six or seven. At this point, I was still
living. And do you have familymembers who you suspect may have long QT
but they haven't gone for testing.I do think that they're distant relatives.
After I received our genetic testing,they sent me a letter so I could
(13:58):
say and out to family members thatthey possibly need to be checked for this,
But they would say things like thisis the first I've heard of that,
And I just shared the information thatwas given to me because we could
possibly have that same gene. Theynever really contacted me over it, but
I did. My part is sharingit with them. Yeah, I definitely
think it's still out there. I'mnot sure. Maybe it's scarsen and they
(14:22):
don't want to talk about it,but it's out there and it's happening.
We have one side of the family. They just won't admit that it come
from that side. And back thenwhen you had a seizure, you had
a fit and it was embarrassing.Sure, it was different than it is
today. How old were your granddaughterswhen you discovered that the long QT syndrome
(14:46):
gene might be part of your familyand how did they react to being tested.
Alexis was on late five, soshe was fine with it. Jessica
was two. They had done severalekg's of Jessica because she was only two,
and it really didn't start showing alot until she was five. Now,
(15:07):
my granddaughter Alexis, she had herbaby boy and he does have long
qt. He was the youngest diagnostin our family at two days. Oh
amazing. They whisked him up andtook him to the nick You. My
granddaughter had reached out to me andshe said, he's ekg isn't looking good,
grandma, And I'm thinking, ohboy, And now she's getting ready
(15:31):
to give birth again. So let'sall pray that gene is not going to
be carried on through him. Butwe will see they'll be ready. That's
amazing. Yeah, poor little babyboy has been on it for his whole
life, since he's been two daysold. Wow. Do you feel that
now that your family has a properdiagnosis, your family has a new lease
(15:52):
on life. Absolutely now, becauseyou can live your life normally. My
granddaughter Alexis, who was a colorguard. She was very busy, always
dancing, but she had a heartto fibrilaate or so in the event she
did go down, she would berevived. Yeah, it definitely gives you
a new lease on life. Andit's not a death sentence if you do
have this. It's treatable, butit could be a death sentence if it's
(16:18):
not treated, which your family knowsall too well exactly, and all you
have to do is follow everything.When you go to your pharmacy, you
give them all your medical history.We have long QT and it's in their
system, I'm sure. But thenwe can't take just anybiotic. We can
only take maybe the pen of sillardsbecause the other antibiotics can start our heart
(16:42):
into an arrhythmia. We can't takeben a drill. Even if we take
something number of the counter, weget a package, we take it up
to the furnaces and ask if thisis safe with long QT syndrome. Okay,
so now that you have a defibrillator, is that right? A pacemaker
which we have. We have adefibrillator and it is a life saving device.
(17:04):
So if you go into cardiac arrest, it's going to shock your heart
back into rhythm, but it hasa pacemaker in there. It's going to
pace your heart back into a normalrhythm. So if it drops real low
from being shocked, it's going totry to put you back into rhythm.
It also records any activity you have. It's amazing device. Very costly,
(17:26):
but it's amazing. I'm sure itis costly that your insurance should cover that,
right, Yeah, depending on yourinsurance. But yes, it covers
it. You just have to makesure deductable. But rtt he doesn't have
one because they do not want toput a defibrillator in you unless they absolutely
have to when you're small. Mygranddaughters did not receive it until they were
(17:51):
twelve or thirteen years old because thebody changes so fast and they have to
put it in a place to protectit. Because you know how rough kids
are, so I guess they weren'tas worried about the children having sudden cardiac
arrest as they were when you getolder, because it does sound like most
of the people passed as adults,not as children. That's true. My
(18:15):
granddaughter Alexis had a horrible episode.She needed a defibrillator place, and her
mom didn't want her to have itput in because she wanted her to be
active in golf, which was ahorrible decision. So Alexis started having seizures
and once her heart started in arrhythmia. She ended up being at Rightly Hospital
for well over a week. Ihad gotten up there. One day she
(18:38):
sets up in bed, her eyesrow back in her head. They had
to call a code blue. Soyou can imagine where I was at that
point, I thought, I cannotdo this, but you need to give
that defibrillator in your body. Idon't care what activity there is. That
is a life saving device and thatneeds to go in as soon as you
can get it put in. Sois having a dicibulator casemaker, which is
(19:03):
what it sounds like you all have. Is that prohibitive for playing golf or
other sports? You can play golf. I think it's competitive sports they want
you to stay away from because theydon't want it to get hit, like
with football or soccers. Exactly.Yes, got it. I feel like
there's certain activities that my grandson isgoing to be able to do once he
(19:26):
gets a little older. We're notsure, of course, that will go
through the physician. And I knowLexa that she had that horrible event.
There's no way she's going to everallow her son to have the experiences that
she unfortunately had to endure. ManagerWorski has written several books to empower the
congenital heart defect or CCHD community.These books can be found at Amazon dot
(19:49):
com or at her website www dotBabyheartspress dot com. Her bestseller is the
Heart of a Mother, an anthologyof stories written by women for women in
the HD community, and as otherbooks. My Brother Needs an Operation,
The Heart of a Father, andHypoplastic Left Heart Syndrome, a handbook for
parents will help you understand that youare not alone. Visit babyheartspress dot com
(20:15):
to find out more. Heart toHeart with Anna is a presentation of Hearts
Unite the Globe and is part ofthe hug podcast network. Hearts Unite the
Globe is a nonprofit organization devoted toproviding resources to the congenital heart defect community
(20:36):
to uplift, empower and enrich thelives of our community members. If you
would like access to free resources pertainingto the HD community, please visit our
website at www. Congenitalheartdefects dot comfor information about CHD, the hospitals that
treat children with HD, summer campsfor HD survivors, and much much more.
(20:57):
In our most recent episode, wetouch about pregnancy and long QT syndrome.
So can you tell us about someof the newest additions to your family?
Absolutely, Anna, I'm so happyto say, even though I have
lost my two children, they gaveme a granddaughter each and those granddaughters are
(21:18):
giving me great grandkids. I havemy precious little Armani, my granddaughter Jessica
has, and their Alexis. Shehas the most adorable golden hair boy.
I can't stand and he's so cutebecause my son had golden hair and I'd
been one of my golden hair boys. And then she's expecting another one in
just a few weeks, so it'svery exciting. It is so exciting.
(21:44):
Oh my god, three great grandkids. And then my other granddaughter she's expecting
in April, so we're very excited. Wow. Okay, so you have
Jessica, who has long qtea andshe was Chrissy's that was Chrissy's daughter,
Yes, and she has her daughter, but she's just the sweet as could
(22:06):
be, of course. And thenwe have Alexis. That's my son,
Jimmy's daughter that she has ret andhe's getting ready to turn two years old
here next week. And then weare expecting another baby, Casey, maybe
after Christmas, but he'll let usknow when he's coming. Yeah, babies
(22:27):
have their own timetables, don't they. And yes, you have other children
who have also given you grandbabies.My husband's granddaughters expecting her first baby in
April, so we're very excited.We just have babies everywhere. Oh my
goodness, that is so exciting,especially around the holidays. Yes, it
is. It's so fun to havebabies around. It really is tiring,
(22:52):
but fun. It is tiring.I understand since I have a five year
old grandbaby myself, and she wouldnot like me grand baby granddaughter myself.
Is she already like that? It'sso young? Oh my gosh. She
is in jiu jitsu Resilian jiujitsu classesnow she's four. But her father also
(23:14):
started taking taekwondo, not jiu jitsu, but he took taekwondo at four,
and she's just a little natural.So yes, she's very grown up.
She may only be four, butshe asks more like she's fourteen. Oh
my goodness. I'm a little concernedfor you guys when she turns thirteen.
And that's all, oh HARMANI is. She is very independent. She wants
(23:37):
to do everything on her own.And she here, she comes running with
a knife, and now we don'tdo that. You know, some things
you're not going to do on yourown. That's not your choice, right,
So she's very independent. I thinkthat's awesome, and probably takes after
her grandmother a little bit for hergreat grandmother, right, yeah, yeah,
(24:00):
I told her I was their greatgrandma. She goes, no,
you're just my real grandma. Okay, I thought that was sweet too,
I'm sweet. She sounds amazing.Jessica and Alexis didn't get their pacemakers until
they were into their teens. Butit sounds like the younger generation that they're
starting to put the pacemaker to fibrillatorsin earlier. Am I understanding that?
(24:23):
Right? Not really? No?And let's okay, and let's write if
he would have an event, andif that was the same with Jessica and
Alexis, if they would haven't hadan event younger, they would have to
put the pacemaker in their stomach toprotect it, right, because they have
so much growing to do, theyjust couldn't put it in the chest.
(24:45):
Plus then you have the stomach toprotect it. So right, No,
let's pray he never has an eventand then he just does what we do?
We go get it in at thirteenyears old. And okay, so
he was diagnosed two, but theydidn't jump to doing something about it.
He was not accessed at two days. Oh two days okay, Yeah,
(25:07):
at two days old, but theydo blood. Then when the EUKG look
very similar to my granddaughters, whichhers looks just like my then they went
ahead and started email the beta blockerswhen they were like ninety eight percent sure
it was long QT. With ourfamily history being so scary, so he
gets his medication twice a day.He takes it like a real chance.
(25:30):
Okay. So they are attending tothis diagnosis via medication, and it's not
the same medication you had for epilepsy. This is specifically for long QT syndrome.
Yes, to keep their heart,hopefully, to keep their heart and
rhythm so they do not experience anepisode. Okay, so that's good to
know though that as infants they're notnecessarily needing the facemaker right away, but
(25:55):
they are putting them on medication tokeep their heart and normal rhythm. Yes,
when Alexis gives birth again, inthe event that the EKG would look
similar to our heart rhythm, thanit'll probably be the same exact process.
Now, Armani does not have it. She is the first of my children
not to have it, and unbelievable. Why no, that is yeah,
(26:21):
because I have Jimmy and Chrissy Alexisand Jessica. So I'm just thinking when
she's born, that's it. She'sgoing to have it. First off,
they took her to nick you immediatelyafter she was born. This is the
process, and they monitor their heartrhythm for several hours, and then they
have an electro physiologists come in andlook at their heart rhythm to see if
(26:44):
it looks like ours. The lngQT intervotes and hers measured normal. Wow.
Now is there a concern that eventhough it's an infinite looks normal,
that it could present itself later.Well, they're taking blood, and if
it's not the blood, then Ido still have concerns about medication and things
(27:06):
for And this is just my ownpersonal preface. I really still want her
to have an EPAG just but I'mpretty sure they probably won't because she doesn't
have the gene. Wow, that'sjust amazing. But that just shows how
complicated pregnancy genetics it's all that samelycomplicated, and that medications actually play that
(27:32):
big of a role of that.It's just crazy. Yeah. Wow,
you've experienced a lot, so manygenerations. You've seen your mother go through
being diagnosed very late in life comparedto elective and to Jessica, and yet
she lived in ninety four, which, wow, will Adine, you just
(27:55):
amaze me. She wasn't going togive up. And I tell you,
I still can't believe she's gone onsome days because she was a fighter.
She was a fighter. I thinkthat's part of your genes too, Jackie.
Yeah. Marm would always put herselfdown and I would say, my
goodness, you've accomplished so much inyour life, so much. Can you
(28:18):
imagine it's not enough. You havethe seizures, then your kids grow up
and they start having seizures, andthen your grandkids. Yeah, and to
have to witness that. Wow,Now did she see HARMANI? Oh,
yes, yeah, so that's herwas her great great and rep that is
(28:40):
her great grandkids. And then myniece has two sons. Then my nephew
has a daughter also, so shehas several great grandkids. What a legacy
to lead behind that is a hugelegacy. And then for her to be
the one who saw the mystery.It was because of what happened to her
(29:03):
that you all discovered the long QTsyndrome diagnosis and a revision of the epilepsy
diagnosis, which I think is amazingso one day she called it. She
said she wasn't billy well and herheart was beat fast, which we thought
she had bad boat problems, whichI think she had a combination of both.
(29:26):
But it was at that time Iwas like, are you okay,
Mom? Do you need to goto the doctor, because I believe I
was going to work that day,so I went on to work, and
then I soon to be step back. He went over there and told her,
come on, we're going to thehospital. They took her to the
hospital, and then that's where westarted to receive a phone calls, which
I think she was seventy two orseventy three, saying, your mom's in
(29:48):
the intensive care in the cardiac youknow which Okay, you're seventy two.
You're thinking, okay, that's notuncommon. But we get up there.
I remember looking at mom's EKG andit was the most bizarre looking heart rhythm
I'd ever seen in my life.Oh my God comes in and says,
I need to talk to all yourfamily. So they take us in this
(30:11):
little room and he says, yourmom has something called long QT syndro.
I remember writing it down, thinking, what in the world is this man
that can kill young people without warning. It was like, all of a
sudden, the piece of that puzzlejust went right into place. Sure,
I'm sure that's exactly what happened toyou and your mom. How did mom
(30:36):
react when she got the news?We just couldn't believe it. We always
knew we had something, and wejust because if you do your research on
ephilepsy, it's not hereditary. AndI'm sitting there going, WHOA, why
didn't we ever have it? Ididn't know that epilepsy was not hereditary.
Yeah, and I just couldn't understandwhy we were all having these episodes because
(31:03):
I tell you, my sister arecome very close to losing her life too.
We've all had experience in your dadand my niece she come very close
too. Very sad story, butyet it's a story of hope and resilience.
Yeah, you lose a child,you have to carry on for those
kids. Look at what I havetried to do for my grandkids. To
carry on my children. You haveto be their eyes and ears and carry
(31:26):
on their legacy. I love howyour family has all pulled together. You've
supported one another, You've been braveto confront You've confronted a really serious diagnosis
head on. You and Meledein,you have just taken the word by storm
(31:47):
and are doing so much to informother people so that they don't lose loved
ones as well. I am justso impressed with you, Jackie and your
family's kudos to you. I loveyou all, Thank you Anna, and
thank you for having us on theshow. And I just pray that people
take the time to listen to thestory. It will help save a life.
It's nice to know that even whenthe worst thing happens, and losing
(32:13):
a child has to be one ofthe worst things a mother or a father
can endure, that you can stillfind happiness. You can still find joy
and thank goodness because Ourmani and Rhettand soon to be Casey they deserve families
that are happy and that love themunconditionally and can show them the beauty of
(32:37):
life. That you can live withthis syndrome, but you just have to
be careful, just like with anythingelse, so you can't be a diabatic
and go out and need all thesugar you want. You have shoes,
follow a diet into medication. It'sno different exactly. Thank you so much
for coming on a program today,Jackie. I'm so delighted that we could
(32:59):
tell talk about this and talk aboutthe blessing that comes with this diagnosis.
Thanks for listening today. If youenjoyed listening to this episode, please consider
becoming a patriot this visit www dotpatreon dot com, slash part to Heart
and pledge amplyham out. It onlytakes a few minutes to make a big
(33:20):
difference because of a pizza. Youcan help us continue to provide great programming
for free to they congenital heart defectand bereaved communities. Have a great day,
Happy holidays, and remember, myfriends, you are not alone.
Thank you again for joining us thisweek. We hope you have become inspired
and empowered to become an advocate forthe congenital heart community. Heart to Heart
(33:44):
with Anna with your host Anna Jaworskican be heard at any time wherever you
get your podcasts. A new episodeis released every Tuesday from noon Eastern time.
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